Update on Me

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Hi all,

Just wanted to give an update on my status. So, first a little history: I was Stage 3b but in April I noticed a tiny black nodule on my left breast and then found another one on the opposite side of the breast. Went for surgery to remove the second lesion and another black nodule was found underneath. Everything came back positive for melanoma. As I was waiting for the results to come back my left breast became very swollen and lumpy. Went for a breast ultrasound and mammography which picked up at least 4 internal lesions.

I was deciding btwn. a clinical trial at Sloan Kettering vs. the NIH. Both required a brain MRI. I had 2 episodes (a week apart)of a terrible headache and vomiting so my surgeon onc. pushed up my brain MRI and surprise, surprise 3 small lesions were found (4mm, 4mm and 8mm). My surgeon thinks the headaches and vominting were a coincidence b/c the lesions were to small to be causing symptoms. Neuro onc told me brain mets in melanoma gave a median survival rate of less then a year but felt with my age and performance status I should surpass this---I better surpass this--have two small children and a whole lot of living to do!!!

Had Gamma knife on July 8th. Started chemo June 31st (Cisplantium, Vinblastine, Temodar), started Nexavar/Sorafenib daily July30. First 2 cycles were not so bad, but as I approached the 3rd cycle I had bad vomiting and dry heaving that would not go away. I lost at least 10 pounds in 2 weeks. It was awful. I went to a very dark place...when you feel that sick you really don't feel like fighting anymore. I never want to feel like that again. My doc was a little perplexed as to why I was vominting because it started during my "good" week. But I do take the sorafenib everyday so I think it's that. Got a PET/CT about a week ago and had a nice response to the chemo. Not exactly a partial response but almost. The SUV in the left breast was about an 8 before treatment and now it is down to a 3. Also had a brain MRI in the beginning of August and that was stable...nothing new. But I was told the next MRI in October will be most indicative of prognosis.

So holding steady for now. I think my next treatment option will be at the NIH. But then again, that all depends on what happens. My doc gave me a paper the NIH recently published which showed some success with their TIL therapy and brain mets which is encouraging.

Does anybody know what your chances of brain mets returning once you have had them? I keep forgetting to ask my docs this question.

Thanks for the post. You raise a great question...there has been not talk of removing the tumors in the breast and I think there should be a discussion about it. Especially, since I still have significant pain in the left breast. The doc tells me that he thinks it's lymphedema and not melanoma. From what I understand, there is nothing therapy wise that can help with lymphedema in the breast. But I wonder if surgery or actually a mastectomy would be an option to get rid of the lymphedema. Or would more surgery to the area just exacerbate the lymphedma? Such a fun disease eh???

You have so much going on and so many decisons to make. I truly do wish you the best. I tried to find out about brain mets recurrance but drew a blank. If you get an answer, please let us know. In two weeks I get my first brain MRI since WBR.